It’s the eve of the end of another time in my life that I probably wouldn’t have the perfect name for if I didn’t also have the perfect therapist for me. Cheryl, my precious therapist who thinks she’s retiring in a few weeks, dubbed this time the end of my Era of Stringent Particular Inflexible Aesthetics.
Ok. I added in a few extra words in the name but you’ll soon understand why. I think Cheryl would approve of my extra words because our session today identified those key traits of Old Me’s old standards. And dudes, if I may call you dudes, I have some serious aesthetic expectations about my life. Not just about how I look, no, it’s about so much more because over the last four-ish years since my MS diagnosis I’ve felt bullied into giving up so many of my aesthetic expectations.
Most of them revolve around the way I look and the way I’m perceived externally. Like the way I dress for example. OM (that’s old me for the newbies) would cross the street to avoid being seen with New Me (NM). OM was a person who texted her best friend at the beginning of each new fashion season to alert her to what my new aesthetic was going to be. That would be the fashion season according to Vogue and not according to the calendar because duh. Some of these texts might have read something like:
“This fall my aesthetic is going to be boho chic. Think small floral patterns with pointelle sweaters and booties. Just so you know.”
OR
“This winter I’m going for a shabby luxe aesthetic. Think fur (possibly real I will never tell) with athleisure and high-top designer sneakers but not from Nike or anything lame like that but from Prada or maybe Miu Miu is more the thing I’m going for.”
OR
“This spring I’m going for a sultry hippie aesthetic. Think flowy dresses in mixed prints with open-toed cowboy booties and crochet. But not smelly hippie, SULTRY is not smelly. Oh wait! Maybe open toe Docs would be even better! BRB gotta go google.”
Now those aren’t actually texts I’ve sent my best friend but they’re pretty damn close. I’m guessing my BF could bust out her handy list of ridiculous things I’ve either said or texted to her that she used to have printed up and made into little books for me along with corresponding ridiculous selfies I’d posted to Insta in the past year. Those books are priceless. Yes. I do keep them. ALL of them. I say a lot of ridiculous things. Or I used to. Now my texts are usually about things like why I can’t poop like a normal person or how long I can acceptedly go without an actual shower where water touches my actual body. OM would cringe. OM would send a text like this to my BFF about NM’s winter aesthetic:
“She looks like her aesthetic for winter is a thicker, bulkier less-streamlined homeless person who raided an emo girl’s all black everything wardrobe kind of aesthetic. Why would someone choose those clothes willingly?!?! Maybe she’s fallen on hard times. Should I create a Go Fund Me or crass?”
Yep. You’ve heard me rant about how much I miss makeup. The effort I used to put into getting dressed each morning where I’d coordinate my makeup look with my clothing look with my jewelry look and then my shoe look which needed to either match (or intentionally mismatch) my bag look which I would often change every single day. Sometimes I’d even change my freaking wallet. And of course I’d change my eyewear, both regular glasses and sunnies. I KNOW. I was ridiculous but I was so happy! It was my creative outlet. My lame attempt at self-expression. My commitment to being that girl, the girl I wanted everyone to see. Hell. My entire life had an aesthetic. Which brings me to the end of this era.
My home is a physical manifestation of ALL of this aesthetic obsessed living. My home was the first place I’d ever lived alone, for one thing. I bought this house after my husband died and then used what little life insurance money I had left to create it in my image. Check that. I created my home in the image of what I wanted to be. That covered all of those things above like creative expression and color and mixed prints and outlandish but purposeful clutter and frankly? It was much more than even that.
This house became the embodiment of both my current then-state (hot, hot sad mess who couldn’t imagine ever being happy again) with the state I longed to achieve that of being an independent, happy, strong woman who takes care of herself (period) and loves her life. It took me a really long time to make that happen but it did happen. It wasn’t pretty how it happened, not pretty at all, but what matters is that it did happen. This house makes me feel safe. Secure. Loved. Loved by me. And that was what mattered most.
Until it didn’t anymore (thanks MS you reliably reliable blatant asshole).
This old house is full of steps and has but two toilets – one upstairs in the actual bathroom and one downstairs in a back corner of my basement that around here we like to call the “Pittsburgh toilet” but both toilets involve stairs, period. Until I got the long-awaited first floor loo. Oh wait. I didn’t get a first-floor bathroom because that whole renovation thing was going to cost a lot of money that NM didn’t really have and didn’t want to go into debt to acquire. I’m 52 now dammit. I’m supposed to be paying down debt not making lots and lots more!
Enter my mom with the potty chair she had from the nice hospice folks who brought it to her house when my father was at my childhood home dying. Even my poor sick father wouldn’t use it, even in his worst days. But I’ve been using it. I’ve been using it a lot and I’m tired of peeing in a damn bucket in a corner of my dining room. THE DINING ROOM. Ok I don’t dine in the dining room ever but still. The first-floor loo is directly behind the cat feeding station. They kindly didn’t evict me but they would have won the court case easily. But tomorrow this all changes because the nice folks from Blackburn’s are coming by in the morning to change my life. Or at least my house.
Tomorrow I am having not one but two stairlifts installed in my perfectly imperfect old house. One to go up where my main bathroom and my bedroom are and one to go down where the litter boxes and laundry are (and that handy rando extra toilet). While they’re here they’re also installing some fancy grab bars in my bathroom so I don’t have to have to die of fear from being unable to get myself off the damn toilet when my stupid legs die whilst I pee. It’s happened a couple of times and I’ve managed, eventually, to free myself but it wasn’t fun and I don’t ever want to be in that position ever again.
Cheryl knew that this long-awaited installation was a bittersweet thing for me. Obviously, I need all of these things. And even more obviously, I am so lucky that I’m able to make these important changes. Not everyone can and that is horrible. That fact alone should make tomorrow a day of gratitude and happiness. Now I can go back to feeling safe in my home! Even when my legs straight up die, which happens ever more frequently these days, I won’t have to have the fear in my heart of getting up or down the stairs. This is so huge. I know it. I know this is necessary and right (and beyond fortunate). But I’m sure I’m going to cry many tears tomorrow and not the tears of gratitude that I should be crying.
I will be losing the last bastion of my normal ability. My perfectly imperfect home. The place I created in the image of who I wanted to be but wasn’t really any longer but I could still pretend I was long as I could drag my dead legs up and down those stairs every day and keep my swanky bathroom swanky (and not terribly safe for me). My powers of denial are nothing to sneeze at, people. But even I can’t deny my disability with permanent and not terribly attractive appliances all over the damn place. They will be there every day. For all to see. For me to not be able to ignore. Their thereness will be undeniable after tomorrow. Denial will no longer be an option. I don’t know, maybe the double rollators, the multiple wheelchairs and the ramp weren’t enough for me? I know. It doesn’t make sense but I mostly don’t make sense either.
Hence why I’m also in denial about Cheryl’s impending retirement.
By the end of the session I explained to her that I knew I needed to do these things. I knew it was a good, good thing. It’s long past time. I’ve been so unsafe, it doesn’t even make sense. I’ve had to call for emergency assistance from various family members to lift my dead and very stiff legs up to each individual step on the worst nights. They were patiently quiet about my stubborn insistence that getting a stairlift was stupid. Most of the time. But that doesn’t mean I won’t cry a bunch when I look at these things. I will resent them. I will curse this stupid disease that keeps taking things from me. Then I will curse me for being ungrateful and stupid myself and I will cry even more. I joked with a good friend recently that I was planning a new feature on the blog that was a video series of me going up and down the stairs sobbing like a privileged idiot.
I won’t do that not just because it would be silly and self-indulgent and horribly obnoxious but because this may be the end of one era but it’s also the beginning of another. The era in which I stop clinging to those things Old Me needed so badly to feel safe and happy and OK pay more attention to what New Me actually needs to also be all of those things. Like the chair that lets me ride around a park with my nephew. The machines that will let me manage the steps without endangering myself and also let me relegate the first-floor loo to the basement for potential future use.
There is one last bastion of OM’s aesthetic. I think we all know what that one is. I got very quiet when I said to Cheryl, “You know what’s coming, right? The day when I need to give up my last joy. The one where I drive around in my ridiculously impractical car with the top down singing along to inappropriate rap music as I drive through Sonic and buy myself a Sonic blast because I won’t have to get out of the damn car to enjoy it. Those days are coming to an end soon. I can feel it coming. It’s dumb to pay for a car you can only drive on good days when good days are becoming very few and far between. What am I going to do then?”
And she said, “Well. When that happens you will get a practical car that has hand controls and a big old trunk for your wheelchair and a mini-lift thing to get the damn thing into the trunk and on the good days when it’s going to be sunny and cool but not too cold? On those days you will rent yourself a convertible and turn the music up really loud.”
And this, my friends, is why Cheryl can never really retire. Which one of you is going to break it to her?
Debbie
November 6, 2019 5:41 amEach of your posts truly capture the emotional roller coaster of living with MS. Letting go of the old and acceptance of the new…..easy to say, but so, so hard to do.
bethnigro0212@gmail.com
November 6, 2019 11:06 amIt’s so hard to do! I think though that making the effort might be the key to happiness moving forward. Thanks for your kind words. ♥️
Linda
November 7, 2019 10:47 amDebbie, I strongly agree with you. Letting go and acceptance is quite a struggle. After all these years of telling myself, “I can’t do ‘that’, but what about ‘this’ ?” is one way I push forward. Fear is a huge obstacle for me as well.
bethnigro0212@gmail.com
November 7, 2019 2:27 pmThose are lessons I need to learn. It’s taking me some time! But I’m guessing that’s natural. 😉
Linda
November 7, 2019 11:06 amHi Beth,
Another great read! Now that my kiddos are grown and too am looking for my new creative outlet. My other life I was a hairdresser. Back then I worked 10 hour days in heels! Haha I loved great clothes with outrageous shoes, coordinating bag….with of course artsy jewelry too. I searched for great finds for my (tiny modest, but my) home. Still like TJ’s or Marshall’s for finding cool stuff. I love their shoes. I can usually grab a great pair of edgy flats …….Okay so now what? A friend thinks I should try needlepoint. Hell no. I’m considering painting, maybe watercolors. Not sure 😁
bethnigro0212@gmail.com
November 7, 2019 2:29 pmI used to paint with oils and loved it. If one more person told me to take up needlepoint I’d scream. No disrespect to those who love it! But yeh. Not my thing. Thanks for reading!! ♥️